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The ultimate civil liberty.

By the time this issue of The Humanist is in your hands, the United States Supreme Court will have announced its decisions in two cases, from the Second and Ninth U.S. Circuit Court districts, challenging the constitutionality of laws criminalizing assisted suicide. In both cases--originated by Compassion in Dying of Seattle, Washington--the federal circuit courts have upheld physician aid in dying.

In the Ninth Circuit, an existing ban on assisted suicide was successfully challenged under the equal protection clause of the Constitution's Fourteenth Amendment. The court noted that, under present law, a dying patient on life support may legally have it removed to facilitate death while another dying patient, not on life support but suffering under equivalent circumstances and equally dose to death, has no means by which to achieve the same end. The court, therefore, ruled that, essentially, bans on assisted suicide constitute a violation of the second patient's equal protection rights under the Fourteenth Amendment.

In the Second Circuit, the court ruled that a similar ban on assisted suicide in that district also violated the Fourteenth Amendment. This ruling, however, was based upon that amendment's protection against deprivation of liberty without due process of law.

While predictions of the outcome vary widely, right-to-die activists are anxiously awaiting these Supreme Court rulings, and several legislative measures are on hold pending the outcome. But with the imminence of a possible resolution to a public controversy that has raged for more than twenty years, a disconcerting but undeniable fact has come to light. It seems that many generally supportive people have begun to express grave reservations and questions and to reveal serious misconceptions about the legalization of physician-assisted suicide. After over a decade of direct involvement in the right-to-die movement, I feel partly responsible for the movement's failure to adequately inform and educate those most inclined to support right-to-die efforts.

Active and Passive Euthanasia

Perhaps the most significant source of confusion for these individuals is the effort to make a moral distinction between withdrawal of life support systems (everything from ventilators to nutrition and hydration) and physician aid in dying, as proposed by the right-to-die movement.

Under current law, a clear moral distinction has been assumed. One group of actions taken to bring about the death of a dying patient (withdrawal of life support, referred to by some as passive euthanasia) has been specifically upheld by the courts as a legal right of a patient to request and a legal act for a doctor to perform. A second, admittedly different, group of actions taken to bring about the death of a dying patient (physician-assisted death, referred to by some as active euthanasia) is specifically prohibited by laws in most states banning "mercy killing" and is condemned by the American Medical Association. Although it is not a crime to be present when a person takes his or her life, it is a crime to take direct action intentionally designed to help facilitate death--no matter how justifiable and compassionate the circumstances may be.

Supporters of physician-assisted suicide maintain, however, that, despite the fact that both groups of actions clearly involve the performance of different procedures by doctors, both remain essentially equivalent morally. Motivated by the same compassion, they both initiate active steps that will lead to the patient's death. Yet, only by instituting new laws permitting and regulating physician assistance can the law be brought into alignment with this moral reality.

As proposed by right-to-die advocates, physician aid in dying is the direct prescription of lethal drugs intended to cause the death of terminally ill patients who request them and who meet specific criteria. During the last decade, laws have been proposed in several states to legalize and regulate this practice. Essentially, these proposals would eliminate current laws banning assisted suicide and create procedures, protocols, and safeguards to regulate its careful application to certain qualified, terminally ill people.

Reality dictates the necessity of such laws because, for some dying patients experiencing extreme suffering, a lethal prescription is the only way to end an extended and agonizing death. Consider the terrible dilemma created when so-called passive measures fail to bring about the hoped-for death. Are we to stand helplessly by while a patient whose suicide we legally agreed to assist continues to suffer and deteriorate--perhaps even more so than before? Or do we have a moral imperative, perhaps even a legal responsibility, to not only alleviate the further suffering we have brought about but to take action to fulfill our original agreement?

Thanks to the educational efforts of the right-to-die movement regarding the plight of patients like these, national polls continue to show that growing numbers of Americans support regulated physician-assisted death for qualified terminally ill patients. The latest Gallup poll reveals that 75 percent of adult Americans favor aid in dying. This figure compares to 53 percent in a 1982 Harris poll and to 65 percent in 1988. The movement's extraordinary educational strides were also reflected in the passage of Oregon's Measure 16 and the narrow loss of Initiative 119 in Washington State (both would legalize physician-assisted suicide). But in spite of these high levels of public support, elected officials nationwide remain opposed to this form of aid for the terminally ill.

Why in the Courts?

Another argument offered is that the issue of death with dignity doesn't belong in the courts at all and shouldn't have been taken there by the Quinlans back in 1975. (I note, in particular, M. L.Tina Stevens' article in the March/April 1997 Humanist.) The argument goes that we are wrong-headed in trying to change the law; that the law is somehow (or ought to be) irrelevant; and that the problem can and should be solved discreetly by "families, friends, physicians, churches, and communities."

I sincerely hope I'm correct in assuming that this objection is also the result of inadequate or erroneous information, for only a historical misinterpretation of both the right-to-die movement and the intended function of the judiciary in our constitutional system could lead to such a conclusion. Clearly, lack of legal immunity and actual legal prohibitions were in the past, and still are, the single most significant barrier in the path of physician-assisted suicide for the terminally ill. Nevertheless, some adamantly maintain that both litigation and legislation remove the issue from the realm of compassion and concern for the dying and into some sort of coldly detached alternate reality. This is a puzzling stance, since it is just such highly charged issues involving fundamental human rights--from abortion to desegregation--that we have always relied upon our courts to interpret and clarify. Indeed, this is the central function for which the courts--the Supreme Court, in particular--are intended.

Alexander Hamilton wrote in the Federalist Papers that "the duty of the courts must be to declare void all acts contrary to the manifest tenor of the Constitution. Without this, all the reservations of particular rights or privileges would amount to nothing." Even Chief Justice William Rehnquist writes, "The idea of an independent judiciary, with authority to finally interpret a written constitution . . . is one of the crown jewels of our system of government."

Still, some lament that the process has been stolen from family, church, and community and stripped of its "humane informality." But leaving the dying process "informal" has, to date, resulted in the rights of the dying being denied, ignored, and overridden in a random and arbitrary fashion by virtually everyone involved. So, yes, it is entirely accurate that we seek to wrest the individual's right of self-determination in dying away from family, church, and community, as well as from the state and the medical profession, and put it directly in the hands of the dying person--the only place it belongs.

How else can we aspire to the goal of death with dignity for all who seek its solace? The Quinlan ruling marked the first time a legal right to facilitate death by withdrawing life support was declared in any court. Although only applicable under narrowly defined circumstances, it still represents the first step in the necessary legal process employed for decades by democracies to establish and codify human rights.

The Quinlan decision did not, however, remedy the needless and cruel suffering of most dying patients. Since that first ruling, the situation has become many times worse, as a growing number of the terminally ill have fallen victim to ever more sophisticated medical technology. It is now our responsibility to complete the necessary legal process to secure for all Americans the ultimate civil right of self-determination in dying.

Those, however, who maintain that there is some "better" way to secure physician aid in dying for terminally ill Americans in great suffering must bear the burden of formulating and presenting that alternative. Similarly, those who insist that we don't need a legal right to die or that the problem is being adequately managed by the medical profession must prove that a significant number of doctors are now providing this benefit. They aren't, of course, because it is currently illegal for doctors to prescribe or administer lethal doses of drugs.

Isn't it self-evident, therefore, that, in order to grant the wishes of dying patients for help to end their suffering, we have to change the fact that doing so is against the law? How can we ask doctors--in consultation with "families, clerics, and communities"--to commit a serious crime for which they risk losing their licenses and possibly being arrested and going to prison? The legal issues must be confronted and a legal right to request physician aid in dying for the terminally ill secured.

Even if a large percentage of doctors were already providing aid in dying, the question of whether they should continue to do so covertly, free from any legal oversight or protocols, would still demand an answer. Those who cringe at the highly public nature of Dr. Jack Kevorkian's activities should give special consideration to this question.

They should also give consideration to the reason why many of us who essentially support Kevorkian are nonetheless uneasy with his inconsistent criteria and minimal safeguards. The thought of thousands of individual doctors applying an equal number of different subjective criteria to their practice of aid in dying should be profoundly unsettling to anyone. Midge Levy, president of the Hemlock Society of Washington State, summed it up in a recent letter to the Seattle Times:

We look forward to the legalization of physician assistance

for qualified patients who meet all the criteria,

complete with reporting requirements to eliminate the

possibility of abuse. Without laws governing the

practice, we will continue to deal with the equivalent of

back-alley abortion in the right-to-die movement.

In this regard, our experience regarding doctors' reliability when it comes to honoring living wills is anything but reassuring. Refusal of heroic measures and requests for withdrawal of life support are being blatantly ignored, sometimes even in the face of living wills and the instructions of the patient's designated durable power of attorney for health care. Our worst fears were confirmed in a recent study reported in the Journal of the American Geriatrics Society, conducted by doctors Joan Teno and Joanne Lynn at the George Washington University Center to Improve Care for the Dying and by their colleagues at seven other medical centers. This study of 4,804 terminally ill patients found that only 688, a mere 14 percent, had prepared written directives regarding what medical care they wanted or did not want, or had designated a durable power of attorney for health care. Of those, only twenty-two--or 0.5 percent--were as detailed as they should have been in their directives. Worse yet, nearly half of those were later contravened.

An earlier ten-year study, published in 1996 in the Journal of the American Medical Association, revealed that over 50 percent of patients ended up in a"highly undesirable state"--in other words, being kept alive despite their wishes. Even more troubling, researchers found that, despite several attempts by families to communicate the patients' wishes, doctors still ignored them and put patients in intensive care units under highly dehumanizing conditions.

What About Possible Abuses?

Having participated in the grueling process of drafting Washington State's Initiative 119, I can certainly understand the reservations and questions about how these proposals would work and what measures have been included to avoid abuses. However, assisted suicide proposals in California and Washington, as well as Oregon's voter-approved Measure 16, meticulously detailed such procedures and safeguards.

Those in the right-to-die movement agree that as much as possible needs to be done to ensure that no one is coerced into requesting physician-assisted death. This is why all proposed aid-in-dying laws make it a crime for anyone to engage in such coercion.

Of course, no law can ultimately guarantee that coercion will never occur. Likewise, there is no guarantee that all forms of coercion have been eliminated from a host of other life decisions and situations. We can't know for sure what family members' motives may be in any number of already-legal health care and other decisions in which they participate. But shall we curtail our available choices because we don't believe people can always make them for the right reasons or because we fear possible abuses? Or should we continue to expand our individual choices and freedoms while doing our best to prevent inappropriate and coercive influences and to educate all people in critical decision making?

Bishop John Shelby Spong, Episcopal priest and president of Churchman Associates, addressed this issue last year in his statement to a House subcommittee hearing testimony about proposed aid-in-dying legislation:

I suppose it will be quite impossible for all malfeasance

to be eliminated from this area of life. Malfeasance has

not been eliminated completely from any other area of

human activity. I do suggest, however, that this is only an

excuse, and a poor one at that, when we assume that

the same human brilliance that has produced the

miracle of modern medicine cannot also solve the

problem of prohibiting improper decisions while still

allowing individuals the choice of how they want to live

out their final days.

The truth is, however, we have no reason to believe that granting the terminally ill the right to voluntary, assisted suicide would somehow lead to coerced deaths. Back when living wills were controversial, opponents made the same dire prediction, insisting that allowing people to refuse "heroic measures" would lead to the virtual collapse of the medical infrastructure as we know it and turn doctors into Nazis. Nothing of the kind has happened.

Recent claims that involuntary deaths have occurred in the Netherlands (where assisted suicide, although not officially legal, is regulated and not prosecuted) are much exaggerated and distorted. Furthermore, the situation in the Netherlands is not comparable to ours in several important aspects. Perhaps the most significant difference is that the Dutch enjoy national health care. To name a few others, the Dutch guidelines require that doctors determine when their patients' suffering has become 5'unbearable" and do not require that patients be able to request assistance several times before and at the time of death. In any event, due to the rigorous safeguards built into recent proposals in the United States, abuses would be extremely difficult to perpetrate.

In fact, abuses are far more likely to occur within the present unregulated, covert, and occasional practice of assisted suicide. There is no accountability for such deaths, no procedures, no safeguards, and no reporting requirements. How much safer and more empowered all those involved would be if laws such as Oregon's Measure 16 were in place nationwide.

Will Too Many Women Choose This Option?

Still, there is the concern some feminists raise that many more women than men reportedly choose physician-assisted suicide, and that so many of Kevorkian's patients are women. The fear is that, in our society, women are especially vulnerable to the gender-biased pressures of duty and the expectation that they should put the needs and desires of others ahead of their own.

To answer this, it is important to first ask how possible it is to reliably determine anything about requests for physician-assisted suicide. In the present state of the law, few records are kept. Doctors performing illegal acts can hardly write "physician-assisted suicide" on death certificates.

If, however, such a sexual disparity were someday verified, it isn't automatically clear how this data should be interpreted. Other highly significant factors could also contribute to a disproportionate number of terminally ill women seeking assisted suicide. For example, there is the fact that women currently live longer, tending to die more slowly from longer-term conditions than do men, and the fact that women tend to feel freer to seek any sort of medical care, to acknowledge pain and suffering, and to classify it as unendurable. By contrast, men who are trained from an early age to be stalwart about pain and sickness, to not show weakness, and to "tough it out" may be less inclined to seek a relief that they, in fact, desire.

Again, we must acknowledge that we cannot guarantee that no one will ever seek physician-assisted suicide in response to unfair social, cultural, family, or other pressures, even those rooted in gender bias. Many aspects of our lives are influenced in some way by enforced gender roles--which are no less despicable than any other sort of bias. So it is just as important to confront and challenge gender bias as it is to work against all other bigotries.

But let us also remember that gender bias is a two-way street. To cite just one example, many more men than women have fatal heart attacks before age fifty-five. We know this is often caused by the extreme stress produced by our cultural and social expectations of men. In order to be a legitimate member of our society, men must work full time--and more--in order to make as much money as possible and take care of the welfare of others, primarily (but not solely) women and children. What can we do about this enforced duty which steals so many years from so many men's lives? Shall we prohibit men from working--perhaps past a certain age? Or should we work to eliminate the gender bias which is the underlying cause of the problem, just as we must continue to work to eliminate gender bias against women?

What About the Disabled?

Another source of opposition to physician aid in dying comes from some advocates for America's 49 million citizens with disabilities who are rightly concerned about society's tendency to negatively regard the disabled and to devalue their lives. These advocates fear that this attitude will effectively induce many disabled people to seek (or will encourage their families to induce them to seek) an earlier death through assisted suicide.

But the simple truth is that physician-assisted death for the terminally ill has nothing to do with the disabled. Disabled people are not terminally ill. Aid in dying would be available only upon repeated request and only to terminally ill individuals for whom death is imminent. I have encountered the convoluted assertion that to say aid in dying has nothing to do with disabled people is to deny that terminally ill people are disabled. But this is an irrelevant statement devoid of any logical significance. The relevant fact is that the vast majority of disabled people are not terminally ill. A person must be terminally ill to request physician aid in dying, period.

Karen Hwang, a spinal cord injury survivor, speaks and writes eloquently as a disabled advocate of physician-assisted death:

It is regrettable that certain "advocates" insist on treating

us as if we were too naive or ignorant to make rational

choices regarding our own lives. . . .There are many ways

to victimize people. One way is to convince them that

they are victims. A more empowering solution can be

achieved by treating people with disabilities not as

children who need to be protected from the twin evils

of government and the health care industry but as

intelligent and active participants in the political and

medical decisions affecting their lives on all levels. Given

this framework, the push for legalizing assisted suicide

for the terminally ill . . . need not be seen as inconsistent

with the interests of disability rights.

What About Financial Pressure?

We also hear that no dying person should have to think about the financial aspects of her or his final medical care. Certainly some--perhaps many--may not choose to think about it, but those for whom this issue is of great importance should not be discouraged from doing so. Families should be willing to discuss the question openly when terminally ill relatives express economic concerns. After all, isn't it only natural for the terminally ill to consider the possibility of leaving their families in poverty should they decide to prolong their final dying process? What a tragic legacy to leave to one's family. Not wanting to be remembered in this way is a perfectly valid choice.

Clearly, the problem of how to deal with the allocation of extraordinarily expensive medical treatment is a profound one. We in the right-to-die movement do not claim to have the answer. But we do know that this problem has little to do with voluntary physician-assisted suicide for those whose imminent death the medical profession can do nothing to prevent.

The economics of health care have always been, are now, and always will be profoundly problematic. It is a travesty that some 37 million Americans have no health insurance. But even under the best national health care program we can ever hope to achieve, the economics of death will not go away. So long as we live in a capitalistic system, the rich will always be able to purchase the best medical experts and the best treatment. Why should we delay establishing a legal right to die for terminally ill patients for whom death is inevitably imminent because we don't yet have a right to adequate health care?

Remember that assisted suicide is available only to those patients who are hopelessly terminal. It has no possible application to those whose medical condition could be ameliorated or improved by certain medical treatments (no matter how expensive those treatments or procedures might be).The right to aid in dying can be invoked only by patients for whom death is unavoidably imminent and only for those who want to die and who satisfy all the criteria required by aid-in-dying laws.

I'm sure there are dying people who, regardless of the degree of their pain and the extent of their deterioration, still want to delay dying for as long as their individual situations permit. Supporters of aid in dying obviously hold personal choice to be of the highest importance and would be just as horrified by the disregard for this decision of a dying patient as they are by the disregard of a dying patient's request for help to end the agony of a prolonged death.

Isn't Hospice Enough?

Still, some otherwise supportive people think that, if adequate palliative care were used, the pain of all terminal illnesses could be controlled and that anti-depressant drugs could relieve the depression which results from a dying person's awareness of increasing deterioration and powerlessness. Using these methods, many believe that hospices can facilitate serene and painless death--and we most certainly need better pain management, more palliative care (including more hospices), and a long-avoided acknowledgment of the inevitability of death. These things would alleviate the suffering of many.

But these reforms alone will not stop the needless suffering of all dying patients. The pain of some is intractable and cannot be controlled even in a hospice setting. There are also other sources of suffering: severe physical deterioration and dependency; decline of mental capacities; inability to interact with others; and loss of personal privacy, dignity, and identity, to name a few. Hospice workers are truly compassionate people, and they provide an essential and invaluable service. But these facilities do not provide lethal amounts of drugs to those who desperately want to end their suffering.

That's why we still need the right to ask our doctors to end our lives when our pain or deterioration has become unbearable. Physician-assisted death is the only possible solution for those patients experiencing unrelievable pain or unbearable deterioration who plead with us as fellow human beings to help them die.

Life and Liberty

We in the right-to-die movement are determined to put an end to the anguish being unjustly inflicted upon the dying and their loved ones. The obscenity of the state denying its citizens the ultimate human and civil right to own and control their own lives and bodies is intolerable. Surely our intrinsic right of self-determination must include the next breath we draw.

We are not arguing for a limitlessly broad right to die. We seek to secure the right of mentally competent, terminally ill individuals to choose a death with dignity and without needless suffering. To quote again from Bishop Spong's House subcommittee testimony:

I believe that we live in a country which endows its

citizens with certain inalienable rights. Among those

rights, newly given, is a peculiar gift of this modern

world: the right to participate in the management of our

own deaths. . . .The legal right to die with dignity is an

essential modern freedom from which mature human

beings dare not shrink. . . .Assisted suicide must never

be a requirement, but it should always be a legal and

moral option.

Barbara Dority was founding president of Compassion in Dying and is currently vice-president and newsletter editor of the Hemlock Society of Washington State. She is also president of Humanists of Washington and executive director of the Washington Coalition Against Censorship.
COPYRIGHT 1997 American Humanist Association
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Title Annotation:controversy over physician-assisted suicide
Author:Dority, Barbara
Publication:The Humanist
Date:Jul 1, 1997
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